ich bin eine lebe

Ich bin eine leber is, of course, “i am a liver” in German. It’s probably not the most practical of German phrases to learn before my big trip to Germany; but it’s comforting and I could use a little comfort right now. I leave today.

Many many many months ago when I imagined that day far, far in the future that I would (probably) have to travel overseas to seek the famed PRRT treatment for my cancer, I imagined that it would be (secretly) exciting to go to Europe for treatment. That I would get treatment one day and be out eating pretzels and drinking beer the next. I imagined that I would beg my parents to take me to Paris or Prague or Berlin or Amsterdam beforehand, you know, while we were in the area. I imagined I would be wearing heels–isn’t that what fabulous European women wear?

Now that the day is today, I am not not excited. I had imagined I would be feeling much better before I left. I have been laying low in my living room for weeks and now i’m supposed to be ready to hop on a plane to fly halfway across the world? I’m not sure i’m up for this; but I have to be, because my tumors are growing and doing crazy things (like causing my legs to swell up) and I need to do something to take care of them. Contrary to my imagination, I will be in the hospital in Germany all week, not eating pretzels or drinking beer. The forecast says rain. I don’t have the energy for much sight-seeing. I can’t fit into any of my shoes. My suitcase doesn’t have room for heels next to all my stretchy pants, compression stockings, prescription bottles, and lung drainage bottles.

In truth, I will be happy when the ordeal is over.

That’s not to say i’m not looking forward to anything. I’m excited about the German train we will ride, about the food, about the apartment we’re staying in for a night. I want to know what an old east-German city feels like. I want to hear German spoken everywhere. I’m interested to experience the German medical system. I suspect I might just be more comfortable in an adjustable hospital bed than I am in my flat bed at home. And once i’ve done it once, feeling like I feel now, the next trip will hopefully be much easier.

As for the treatment itself, my hopes that it will work are buried somewhere inside of all the uncertainties. Where I might be lacking in hope, though, my friends, family, and complete strangers have definitely shown that they make up for it. I am surrounded in hope, and well-wishes, and prayers. For maybe the first time in my life, I really need that. I will think of it when i’m alone in my German hospital room. Hoffen. Hope.

I’m also bringing my new stuffed animal, who i’ve decided to name Leben. Life. May they guide me through this ordeal, along with my wonderful eltern (parents). Here we go. Los geht’s!

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23 Responses to ich bin eine lebe

  1. Coral says:

    I wish you a safe journey, Lindsey. Sending positive, healing, loving thoughts your way.
    Coral

  2. Keep your spirits up and know that other livers like myself are thinking of you. I know one day I will also be going for the PRRT treatment and look forward to hearing about your successful procedure and what I will have to expect. I hope you do get that pretzel and maybe a beer as well. Best wishes.

  3. om bansal says:

    i wish you all the best for your treatment. sure, it will go off well and you remain a liver and inspiration to others who are afflicted by this deadly disease. hope to hear from you after you have had your beer and walked around in high heels. god bless

  4. Caveras says:

    Wishing you all the best too from Germany! I didn’t know they use to “fly in” patients from across the world to Germany for treatment, but the location and place you’re heading to looks like a good place to catch a few quiet days, and I’m sure you will be treated fine and there will be many nice people around. I really hope the time here will do something to improve your struggles and you’ll return to your home with a positive outlook and maybe some real good news too =) stay positive!

  5. Sharon Larsen says:

    I will be thinking of you while you are in Germany. Like I said, I’ve heard great things about the doctors there! I wish for an easy, successful treatment and that you have no bad side-effects! I’m keeping all my digits crossed for you!

  6. Ken says:

    Have a safe journey Lindsey. Sending warm wishes and positive thoughts to you and your parents. Be well.

  7. Lindsey, always remember we all love you. Your wonderful parents and family and friends have proven this to you over and over. Our prayers go with you. Have a safe flight, good treatment and wonderful good news when you return to us.

  8. Anna Goodwin says:

    Good luck. May you recover quickly. My daughter and her doctor opted to not do this and look at where we are today…………………………

  9. Olaina Anderson says:

    Oh, Lindsey. God bless you. I am so sorry to read that you are feeling so poorly and that your shoes don’t fit. I hope you can find a way to be a bit comfortable for the long trip, and that the hospital bed really is more comfortable, and that the treatment works. I’m praying and praying and praying for you. Thank you for all of your writing–I’ve loved it for years, and especially now. Get an extra hug from Leben from me.

  10. Matt says:

    I really like this post !

    From the heart with all of the uncertainty that life holds.

    Let the journey continue !

    We are praying for you, Brave Woman!!

  11. Ash says:

    Go, fight, WIN!

  12. laurie says:

    Hi –I’m writing from Mexico. I don’t even know you, but your voice is so clear. I hope things go well for you there. i almost went to germany two years ago, partly for hyperthermia treatments, but abraxane kicked and i got a breather. not sure where you’re going, or what therapies you’re planning, but may they all go for the best! let us know how you’re doing — and share, if you feel like it, what you learn!

  13. Kelly Bruhn says:

    We admire you and we think of you all of the time! All of our love and support and prayer in this journey.

  14. Mark Zwanziger says:

    Good luck Lindsey!

    I hope it does the trick!

  15. Kat says:

    Gute Reise, lovely Lindsey! I truly hope this treatment works its magic and that you get to steal away for some pretzels and beer. Sending you healing vibes from California.

  16. Gary Bate says:

    Lindsey, Don’t be afraid. You will have a wonderful time. The hospital there is much different than here. It is beautiful, like a resort hotel inside and in a beautiful part of Germany.
    You will be doing a lot of scans. They will hand you your medical file and send you off on your own. You will get used to this, You can roam around and come and go from the hospital as you see fit . Just be there for your scans. When you get the juice you will be on lockdown for 24 or more hours.
    Make sure you stock up on snacks from downstairs mini mart, the food there gonna bring you sucks: piece of wafer thin cheese, piece of thin brown bread, a micro pickle and a slice of hmmm salami? . Have your own Food > Station 33 at the hospital is pretty good food.
    Use your ipad/iphone to face time. Download talkatone and tango (Free apps for Iphone or android, (if you have android the free magicjack app is xlnt) and you can PHONE anyone free so long as you have wifi., which is in your room and central lobby by coffee shop.
    GO TO WEIMER. its only a 15 min drive (north) and you will see what a typical German town is like, also one of the most beautiful and culturally rich towns in Germany.
    It is a small town, lots of great shopping and cafes and restaurants, A lot of history and some great old world buildings and about 5 min before Weimar there is a Mcdonalds.(its ok we all do) Its a straight drive from Bad Berka to Weimar.
    Also going in the opposite direction (south) about 10 min away to Kranichfeld and as you enter the Village there is an amazing and perfect little medievil castle on the hilltop to the right. A great way to spend an hour or two cost about $1 to go in. Very cute , trust me.
    Bad Berka is a cute but small village, 3 grocery stores and a great little asian food take out next to The one store “Diska” i think , its on the left as you come in to Bad Berka.
    The Hoff Brau restaurant in BB is very good and very pretty inside, its at the bottom of the hill, Turn right at main road then quick left at light, It’s straight ahead about 200 yards.
    So Read these tips, trust me they will help.
    SO Remember: Food, Free to leave hospital (you don’t have to ask) Go Sightseeing for a couple of hours or Food Or Shopping?, Sweatpants/sports bra NO METAL for scans. Free VOIP calling Apps. And try to get to Weimar …..Tell Prof Baum Gary and Ann say Hi.
    Best of Luck. You are doing the right thing……Gary……My email is capodad@gmail.com

  17. Paul Glowiak says:

    I am sending you prayers and hope that your trip is successful and the treatment works it’s magic for you. I want to hear you are in remission and can enjoy being young again.

  18. Holly says:

    Lindsey, you write very beautifully. I don’t know you, but as someone with metastatic cancer for the last 7 years, I can so relate to your writing! I dream of traveling; a safari in the Okavango delta in Botswana, or days spent on a Turkish gulet off the coast of Turkey, or living in Paris and attending French language classes….. But, the truth is, when I feel bad, which unfortunately I do, all too often, all i want to do is sit in my cozy chair in the living room, with my special blanket and the side table that holds all my “stuff.” My knitting, a book, water, maybe some pills , my cell phone and my bp machine, lately. The iPad lives in my lap, a present to myself before a hospital stay a year ago.

    I wish you a fabulous experience in Germany; that your treatment works a miracle. I hope all your nurses are super kind and attentive. And hopefully, you’ll have a little time to get out and see some old Germany and drink a stein of beer!

    You’re not alone. You’ve touched so many with your blog. I hate that you are so young and this is happening to you! Do they not do this treatment in the US? I guess not or you wouldn’t have to travel so far…

  19. KELLY says:

    I REALLY DON’T KNOW WHAT TO SAY. OTHER THAN I DON’T KNOW IF I COULD DO WHAT YOU ARE DOING. IMY ILLNESS IS NOT CANCER, BUT IT IS UNTREATABLE AND SCARY. IT IS POST LIKE YOURS THAT CHALLENGE ME AND TELL ME TO NOT GIVE UP! A QUOTE I READ TODAY THAT I FOUND HELPFUL “YOU’FE NEVER BEATEN DOWN AS LONG AS YOU HAVE HOPE, BECAUSE WHERE THERE IS HOPE THERE IS LIFE” SO HERE’S TO HOPE, PRAYER, LUCK AND LAUGHTER. YES LAUGHTER IT WILL HELP KEEP YOU GOING! I LOOK AT IT LIKE THIS WE HAVE THE CHOICE TO LAUGH OR CRY. I’VE READ MULTIPLE PLACES THAT LAUGHTER IS HEALING I HAVEN’T READ THE SAME ABOUT CRYING. WHAT I DO KNOW IS CRYING MAKES SNOT WHICH INCREASES NAUSEA AND LOTS OF CRYING MAKES LOTS OF SNOT AND WILL LEAD TO PUKING! SO LAUGH!

  20. Angela says:

    Dear Lindsey, I was there for my treatment on 5th of may. That was my second visit. Reading your post reminded me of my first trip there, I was feeling the way you were feeling……..but trust me it gets better. Doctors are really nice and staff is very helpful. View from the room is also okey. You must be getting your medication today or tomorrow. Good luck for that. Be positive, I know you must have heard this many times from many people…… I do….. but this is what will help us go on……will pray for you

  21. Angela says:

    I forgot to mention……I too have Pancreatic neuroendocrine tumor which has spread to my liver both lobes.

  22. lauren says:

    I learned about you in the fall of 2011. i was a grad student at ucla and i saw the article about you in the student newspaper. I then realized you looked familiar and it was because you had gone to ucsb. so did i and we were the same year so i knew your face from campus. Well, i waS thinking today about how you were and so I googled your name and found your blog and im glad I did. I really hope te treatment goes well in Germany for you. It is unimaginable what you probably have gone through the past few years and here I am the same age. Well i just thought it was interesting that we ended up in the same grad school. i think i even had a class with you at ucsb or maybe lived in the same dorm. anacapa? manzanita? well just know even random people like me are rooting for you and I hope to hear some good news on your blog!

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